Starchild Abraham Cherrix: The elephant in the room

I hadn’t intended to mention this case again for a while, but an article in Stats.org brought up a point that, although I had somewhat alluded to it, I hadn’t really explicitly addressed. It has nothing to do with the judicial decision, the Cherrixes’ successful appeal for a new trial and the stay ordered by the higher court, or any the legal issues involved with the case.

It has to do with the atrocious reporting of this case by the mainstream media. In other words, it has to do with how the case has been framed, which has been essentially a near total success for the Cherrixes and those who support his right to choose the “alternative” therapy known as the Hoxsey treatment. This is how I described it a few days ago:

I want to emphasize one more time that, although reasonable people can disagree on where parental rights end and the obligation of the state to step in when parents undertake courses of treatment that will lead to the harm or death of their children begins or whether Abraham, now 16 years old, is old enough to make such a decision, there should be no doubt about the scientific and medical issues involved in this case. For one thing, this is clearly not a case of Abraham “giving up” and opting for quality of life over quantity of life. All you have to do is to listen to him in his interviews to realize that Abraham really thinks that the Hoxsey therapy has a high probability of curing his cancer and clings to that belief, even though his tumors have clearly grown while he’s been on the treatment. The Hoxsey treatment is quackery, period. Credulous bloggers who seem to believe that it’s a medically valid alternative to chemotherapy need to understand that it is most definitely is not.

While I briefly mentioned credulous bloggers who seemed to accept the Hoxsey therapy as a seemingly valid medical alternative and lamented that I was so much in the minority in my reluctant acceptance (although not entirely alone) that the original ruling was probably the least bad decision possible, the mainstream press is equally guilty–and has a lot more influence than a few bloggers such as myself. As Trevor Butterworth pointed out:

Here’s an ethical dilemma: How do you report a treatment for cancer that has no basis in science, no demonstrable causal effectiveness, isn’t available in the United States because it is banned by the Food and Drug Administration, and did nothing to cure the person who invented it?

Do you call the Hoxsey treatment quackery? Snake oil? A danger to public health? No, because journalists aren’t supposed to decide what is and isn’t proper medicine.

Unfortunately this respect for the fact that many Americans “believe” conventional medicine is less science than a matter of belief has taken a troubling turn in the case of a teen who want to take herbs rather than have chemotherapy for Hodgkin’s Lymphoma. News reports on the decision by a judge to allow Abraham Starchild Cherrix to forego chemotherapy simply avoided any discussion of why the alternative treatment is banned in the United States and considered quackery by the medical profession.

Exactly. This is the very same way the media handles the whole issue of “intelligent design” creationism. They present “both sides” with a false equivalency, as though there really were a scientific debate. In the case of Abraham Cherrix, while there may be a debate about whether he is old enough to refuse chemotherapy or about how far the state can or should go in forcing him to undergo medically appropriate treatment, there is no scientific controversy at all about whether the Hoxsey therapy is a scientifically and medically valid alternative to conventional therap for Hodgkin’s lymphoma. It just isn’t. However, the “balance” shown in the press has allowed the Cherrixes and their advocates to successfully frame the issue not as whether Abraham should be allowed to choose a useless treatment (which is, in effect, no treatment at all) over effective treatment but as an issue of “health freedom” to choose “alternatives” or as a fight against the “nanny state,” rather than a debate about how far the state should be allowed to go to prevent harm of a minor when the parents refuse appropriate medical therapy, whether by their choice or through their indulgence of their child’s choice.

Mr. Butterworth listed several examples of credulous news coverage that didn’t address the elephant in the room, namely that there is no evidence that the Hoxsey therapy works and in fact exists pretty good evidence that it is no better than doing nothing. I tend to agree with his assessment:

This may be a sympathetic approach to take with a suffering teenager and his family. But it is a little too sympathetic. By describing Hoxsey as a “cancer clinic operator,” readers might just think that Hoxsey had medical training; he didn’t. It’s also misleading to say that Hoxsey was “accused” of “peddling worthless medicine” when the FDA actually forced him to close all of his treatment centers for peddling worthless medicine.

(By comparison, ABC7, Washington DC’s local ABC news affiliate, did a far better job of covering the medical background to this story.)

Another problem with the Washington Post’s coverage is that its earlier stories link to Abraham’s Journey, a site that covers the case from his perspective and solicits donations for the Cherrix family, but there are no links to any conventional medical source on treatment for Hodgkin’s Lymphoma or, crucially, the American Cancer Society’s examination and dismissal of the evidence for the Hoxsey method.

I would say that it’s probably a combination of factors. For example, quite correctly, there is enormous sympathy for Abraham just on the basis of his being a teen with a life-threatening cancer who has already had a bad experience with chemotherapy. Being too “skeptical” of his and his parents “reasoning” in interviews, whether in print or especially on TV or radio, carries the risk of looking as though the interviewer or journalist is attacking Abraham. It would look very bad, and you could imagine readers and viewers writing outraged letters telling the journalist to “lay off” a poor sick kid. Imagine, if you will, a journalist presenting Abraham with this study, which which shows how poorly the Biomedical Clinic in Tijuana, the center in which the Cherrixes have put their faith, fared in an analysis of how their patients did and asking gently what his practitioners told him as far as his odds of survival with the Hoxsey treatment and how it jibes with this study and the utter lack of any good scientific or clinical evidence supporting the efficacy of this therapy in lymphoma.

Instead, we see softball questions, asked almost as an afterthought, that allow Abraham’s talking points regarding his “reasoning” for choosing Hoxsey to be restated, as in his interview with Ann Curry on the Today Show:

Well, the American Cancer Society says that there’s no evidence, but there is plenty of evidence if they would take the time to actually look through it. I’ve done extensive research, and I’ve read the testimonies of people who have been cured by alternative medicine, and I’ve seen it firsthand. I’ve met with these people.

As usual, there is little or no followup to try to make Abraham get specific on exactly what sources he used in his research, whom he spoke to, and what scientific papers he looked at, all questions that would likely show that he used sources that are anything but reliable or scientific. Instead, Abraham gets to dismiss the American Cancer Society with a wave of his hand without challenge, and his claim to have done “extensive research” stands unexamined. I’m sure he probably did do something resembling research, but it wouldn’t surprise me if the “research” he did was on altie websites like Whale.to, CureZone.com, and a variety of others. His decision has the appearance, but not the substance of having been arrived at rationally, as Mr. Butterworth points out:

This is the kind of argument that presumably led syndicated columnist Cal Thomas to write ” I have heard Starchild Cherrix interviewed… and he sounds intelligent, articulate, reasonable and capable of making such a major decision [about his treatment].”

But here’s the problem: Cherrix’s choice to abandon chemotherapy may have the appearance of rationality – he engaged in pro and contra reasoning. And that rational exercise in relation to medical treatment is usually considered an individual right when you are an adult.

But one cannot be impartial with respect to the evidence. For Cherrix to weigh the benefits of Hoxsey over chemotherapy may seem like a rational exercise; but it is fundamentally irrational if there is no attempt to apply a common standard of evaluation to both therapies.

Indeed. All this blather about how “rational” and “calm” Abraham “sounds” is utterly meaningless, a smokescreen. His calmness and seeming thoughtfulness does not in any way mean that his decision is rational or that he applied the same standard to the evidence for conventional therapies and the Hoxsey therapy. It doesn’t mean he isn’t engaging in magical thinking. In fact, as evidenced by this recent interview on the Sean Hannity Show, Abraham clearly continues his magical thinking:

HANNITY: Abraham, let me ask you a very tough question. I’ve come to be very impressed with you and your knowledge of your disease, your knowledge of your situation, your seeking alternative remedies, I think it’s really admirable.

ABRAHAM: Thank you.

HANNITY: But at the end of the day if you make a wrong decision it could result in your life.

ABRAHAM: Yes.

HANNITY: Do you think about that?

ABRAHAM: Well, I really can’t think about that, you know?

HANNITY: But don’t you have to?

ABRAHAM: Well, there’s always that possibility and, yes, you can look at it. But if I’m going to get better I have to maintain a positive attitude.

HANNITY: No, I agree with that.

ABRAHAM: I cannot look into the future, as I said before, and say, This is going to happen to me and I’m so scared. I can’t wake up every morning and say, Oh, my gosh, I’m going to die. You know, I wake up every morning and I say, I’m going to live, and I strive to meet that goal.

So there’s that possibility that somewhere along this line we made a wrong decision. But you know what? If I die, I’ll die happy, and I will die healthy, and I will die in my home with my family, not in a hospital bed, bedridden and sick.

If Abraham dies of lymphoma, he will most definitely not “die healthy.” Does anyone see the magical thinking there? Dying of lymphoma is not compatible with being “healthy.” Abraham will almost certainly not avoid what he fears, being bedridden and very sick before the end. He might be in a lot of pain (for which, I truly hope, he will accept all the best pain management modern medicine can offer). He may even suffer obstruction of his trachea and require a tracheostomy. (This is my speculation based on news reports have stated that one of his tumors in his neck is right next to his “windpipe.” Such tumors could easily cause obstruction.) This same tumor could conceivably grow large enough to obstruct his esophagus and make it impossible for him to eat without a feeding tube. A variety of other debilities and indignities are likely to occur before the end. These are the realities to which he and his family appear oblivious. Yes, Abraham may well die at home with his family around him, and there is certainly something to be said for that if he must die (I’m a big fan of hospices), but his dying at all would have a good chance of being prevented if he were to accede to conventional therapy.

I also note how deferential Sean Hannity is towards Abraham as well, agreeing with him, presenting him as brave for bucking the system and in essence sucking up to him. Hannity’s “hard” question isn’t, really.This sort of reaction is not unexpected, though, given Hannity’s previous rants about Ritalin and ADHD that I’ve heard him give on his radio show. (I used to listen to Sean Hannity. I know, I know, it’s hard to believe, but I did. I used to listen to Rush Limbaugh a lot too.)

In any case, the media coverage of Abraham Cherrix’s legal battle has been amazingly slanted in a way favorable to him and how he and his advocates want to frame the debate. His battle is presented as one for “health freedom.” His choice is represented as choosing a “more natural, less toxic” therapy (often with all too little mention that it is also a completely ineffective therapy). Skeptical questions about the Hoxsey therapy are listed almost as an afterthought, couched in phrases like, “You know, nearly all oncologists consider the Hoxsey therapy to be useless,” without actually presenting the evidence and history of the Hoxsey therapy that leads to that conclusion. Because Abraham is well-spoken and calm, journalists assume that his choice must have derived from good rational thinking, even though his many interviews reveal clear evidence of magical thinking (for instance, another example is his dismissing chemotherapy because “the cancer came back” and he “already tried chemotherapy once,” while making excuses for the failure of the Hoxsey therapy when his tumors continued to grow while he was on it). His religious faith is described approvingly and glowingly, even though it is clearly a significant factor in his chosing the Hoxsey therapy over conventional medicine. Thus, the issue has been framed successfully as one of freedom to choose, rather than of the state attempting to act to save a minor from his and his parents’ bad decision.

Butterworth concludes:

The fact is that the way the media covers this case will have an effect on public health and the public’s understanding of science. Reporters must go beyond the mere right to choose treatment in their stories and focus on what counts as a rational choice in choosing between treatments.

Don’t hold your breath waiting for this to happen.

The principles enunciated by Cherrix are, at best, those of 19th century medicine. Adults have the right to choose such principles in guiding their treatment if they so wish; but they need to be aware that you can’t practice 19th century medicine without achieving 19th century mortality rates.

I wish I’d said that. I’m going to keep that quote for future use.

The entire “conventional” medicine community doesn’t believe that Hoxsey is a hoax without reasons that speak to the success of science and the failure of non-scientific thinking. Those reasons need to be explained by reporters. “He said, she said” journalism is not just insufficient in a case like this, it’s wrong. All the hearsay in the world cannot “balance” out one rigorously-executed clinical trial. To act otherwise is to endanger the public.

Indeed not. However, people are still seduced by testimonials and often pick and choose the testimonials that fit their preexisting bias, even discounting the evidence of scientific trials. This “he said, she said” journalism is bad enough in the coverage of evolution and “intelligent design” creationism. It’s even worse when it is used in the reporting of quackery like the Hoxsey therapy. Although the understanding of biology and science in society certainly suffers and the societal effects from bad science education could be dire, people don’t die when they believe in ID creationism. However, people can die unnecessarily if they see such quackery as an effective “alternative” to conventional medicine.

Over the weeks that this case has been going on, I’ve come down reluctantly on the side of the state intervening to make sure that Abraham gets the care he needs. I’ve taken a fair amount of flak for it, too, with those attacking me seeming to think that I made this decision gleefully, that I didn’t weigh my dislike of excessive government power versus Abraham’s rights, and that I was “partying” when the decision was announced. But, contrary to what some alties think, my motive has always been that I hate to see young people throw away their best chance at a long life on a false promise by quacks. My heart has gone out to Abraham and others like him (such as Katie Wernecke), because they’ve clearly been deceived by false and scientifically unjustifiable promises, even though they would certainly vigorously deny that that is the case. As Abraham’s case has gone on, I’ve tried very hard not to let my heart harden because of his obstinance in the face of so many people trying to save his life. After the last few days, I have to confess that it’s getting harder and harder for me not to say, “the hell with this foolish young man, let him just use Hoxsey and die.”